These three remarkable stories show how the SynCardia temporary Total Artificial Heart (TAH) didn’t just save the patient’s life — it helped them live life to the fullest.
If you or your loved one is suffering from end-stage heart failure affecting both sides of the heart, you may be feeling scared, unsure and overwhelmed. Because heart failure is progressive and unpredictable, patients and their families often have to digest a lot of information quickly in order to make decisions about their care.
Beyond learning about the TAH and how it works, we realize that many people also want to know what living with the TAH is like. We’ve chosen three stories to show you how the SynCardia TAH not only saved the patient’s life, but also helped them enjoy it to the fullest outside of the hospital while they waited for a donor heart.
Just four days after giving birth to her son, Marcela began to experience shortness of breath and fatigue. Her doctors, who suspected that the pregnancy had strained her heart — already weak because of a congenital condition — diagnosed her with cardiomyopathy.
Concerned that Marcela wouldn’t survive long enough for a matching donor heart to be found, doctors at Banner – University Medical Center Tucson (formerly University of Arizona Medical Center) decided to implant the SynCardia TAH as a bridge to transplant.
Soon after receiving the TAH, Marcela’s condition stabilized and she was switched from the Companion 2 (C2) Hospital Driver to the Freedom® Portable Driver, a portable pump for the TAH that can be carried in the Backpack or Shoulder Bag.
The Freedom Driver allowed Marcela to leave the hospital and return home to wait for her matching donor heart with her family. Once home, Marcela didn’t let anything stop her from doing what she enjoyed most. She went to the mall, walked trails and even rode her bicycle.
“It was so exciting to go home and be with my baby,” Marcela explained, after being discharged from the hospital with the Freedom Driver. “I feel really good now and I can take care of my son.”
After 245 days of support with the SynCardia TAH, including 127 days at home with the Freedom Driver, Marcela received the phone call she’d been waiting for: a donor heart had become available.
“You can’t give up,” said Marcela. “There is a light at the end of the tunnel. You just have to go with it. What is most important is to not let anything stop you — do what you enjoy. Now I have more opportunity to live my life to the fullest with no regrets. Everything I want to do, I do it. I don’t put it off until tomorrow.”
After Johnny suffered a “widow-maker” heart attack, doctors tried a number of interventions to treat his heart failure, but a few weeks later, he went into cardiac arrest. He was immediately placed on the heart transplant waiting list, but doctors feared he wouldn’t survive long enough to receive one.
On Feb. 1, 2016, doctors at Cedars-Sinai Heart Institute in Los Angeles removed Johnny’s damaged heart and replaced it with the SynCardia TAH. Just a few weeks later, Johnny was stable enough to be switched to the Freedom Driver, which allowed him to be discharged from the hospital to wait for a matching donor heart at home.
“I came home and I continued my life,” said Johnny. “I played golf, did yard work, lifted weights. I walked 2 to 3 miles per day. The Freedom Driver wasn’t an inconvenience to me because I knew what it meant. Without this machine, I wouldn’t be here. I was proud of it. It was part of my life.”
Six months later, Johnny received the heart transplant he’d been waiting for. Since then, he’s become a grandfather — a milestone that, prior to the TAH, he wasn’t sure he’d live to see — and returned to the field as a soccer referee. Johnny is also training to compete as a cyclist and golfer in the 2018 Donate Life Transplant Games. To prepare, he’s riding his bike 125 miles a week and walking and running up to 10 miles a day.
Johnny’s motivation to train and compete is his heart donor’s family, whom he hopes to meet one day. “There are no words I can say to thank them,” said Johnny. “They lost their 22-year-old son. I really hope to meet them, so I can let them know that their son is still alive in me.”
Despite being diagnosed with cardiomyopathy in 1999, Chris never let his heart condition slow him down. Even with an ejection fraction of only 20%, he continued to hike three to five miles daily and work as a lead instrument technician for ConocoPhilips, which often sent him to the frigid oil fields on the northern tip of Alaska.
But in the fall of 2011, Chris started experiencing shortness of breath while hiking on level ground. At the insistence of doctors at the Alaska Heart Institute in Palmer, Chris and his wife, Kathy, flew to University of Washington Medical Center in Seattle so that he could be evaluated for a heart transplant. There, doctors discovered his heart was functioning at less than 10%, and didn’t think he would survive the flight home.
Because the right side of his heart was so weak, Chris was not a candidate for a left ventricular assist device (LVAD) — a mechanical pump that supports only the left side of the heart. His doctors told him that the SynCardia TAH was his only option for survival.
Seven weeks after receiving his TAH, Chris was switched to the Freedom Driver and discharged from the hospital. Determined to make the most of his situation while waiting for a donor heart in Washington, Chris hiked 607 miles of trails with the TAH and the Freedom Driver. After 219 days of support, Chris received the call that a matching donor heart had become available — and thanks to the TAH and the Freedom Driver, he was ready.
“I was really fit going into that surgery,” he explained. “That’s very different from a lot of people who go into the transplant really sick. After the surgery, they not only have to recover from the transplant, but also from being sick for so long leading up to it.”
Since his transplant, Chris and his wife have returned home to Alaska and taken trips to Hawaii, Oregon, Washington and Florence, Italy. They go fishing. They hike every day, often to search for and set up geocaches. And Chris is back at work — two weeks on, then two weeks off — in the oil fields above the Arctic Circle.
Chris’ advice to other TAH recipients? “Don’t go home and stay cooped up. You need to get out and take advantage of the time you have to get in shape to prepare for the transplant surgery and live life.”